cri du chat syndrome | Lessons from my daughter

I don’t have a lot of “me” time and lately I have used all of it to write this blog!

In a typical week, I would say I have almost 2 hours to myself on Saturday morning between 9 and 11am when Emily is working with her tutor.

During that time, I could go to the market, take the dog to the park, pick-up some grocery, start the laundry….. so many things I could be doing but instead of all that….

Instead of all that….. I drive to a small coffee shop not far from the Sylvan learning Centre and I order a breakfast sandwich (with bacon) and a cafe latte.

I sit there and I read, plan vacations or just play with my phone. Once my food and drink are done, I get back to my car and go sit in the parking lot by the Centre and stay there until Emily is ready to come home.

For me to be alone is a luxury! I have so little of this time with myself that I treasure this 2 hours a week!

I don’t really mind the fact that I always have someone with me, I just miss the little things…. stretching in a bed on my own, sitting on the toilet and expecting the door to the bathroom to stay closed, showering, getting dress…..!

Normally my 2 hour is spent really selflessly, reading something of absolutely no importance. That’s how I want to spend those 2 hours….

This morning, I decided that I needed to fill this form the school sent home a couple of weeks ago….. maybe a month ago….

It’s not a form, it’s a document….. 15 pages, 30-35 items per page. All actions that I need to determine if Emily can or can’t do.

It’s called a Function Independent Skills Handbook (FISH assessment)

It’s meant to help determine what Emily’s teacher & resource teacher will be focusing on next year when she transitions to High School.

It’s depressing… not as depressing as the last time I filled it and definitely not nearly as depressing as the first ever assessment we filled for Emily but still…

When I started answering the questions, I figured I should wait until it was cocktail time to do this but I had ignored it long enough so I just kept going…

Well, it is official…. she can’t cook, do laundry, clean around the house or do any type of woodwork 🙂

And I don’t know if she can operate an audio-tape player…..??? That one made me laugh out loud in the coffee shop! I don’t think Emily has ever seen a tape (cassette) player… Do they still exist? She can certainly manage a CD player, DVD player, XBOX, Play station and Wii but a tape player…. LOL!!! I have no idea!!!

Ok, so that one line item helped making that painful task a little bit less painful!

Still, I decided years ago to look at Emily for Emily and not to compare her to a chart….

Every time I have to chart her, it hurts…!

So today my happy though is………. a tape player? Really? Also, all the questions about speakings……. she got those, she can now speak!!!!

I will ignore all the “can’t” or “requires help” items….

I will move on to the pile of laundry…. maybe I should try to teach both Jon and Emily how to split the colors and remove the delicates…. or not!

It’s a challenge for both of them!

If you were to look at one of your loved ones (with or without a disability) and list all of their challenges in life, would you be able to turn-around, set them aside and concentrate on the positive or would you be focusing on all the things they can’t do?

Try to imagine having to repeat this exercise on a regular basis… could you continue to focus on what they can do, on those small things you love about them and not concentrate on the challenges and negativity….?

Emily’s 4th Birthday…

We’ve moved from our lake side house to a tiny apartment just over 2 months ago…. why we made that move is a story for another day!

Today we are talking about fishing!

For Emily’s 4th Birthday, we rented a cottage for the weekend. We were in the woods at the Fairmont Kenauk with access to a river for fishing.

Our guest list was impressive and we were all staying in the same cottage!

Emily, Jon and I. My dad and his wife. My mom. My in-laws. Melanie (Emily’s god mother). My big brother, his wife and their 2 boys. My little brother. 13 people in 1 cottage.

We had a blast!

We wanted to take Emily fishing on a small boat but she refused to get on the boat so Jon sat on the dock with her and took time to explain to her how to fish…. They caught absolutely nothing but I took one of the most beautiful picture ever… My husband and his baby girl fishing. 🙂 She was so small!

Later that weekend, my father-in-law suggested we took Emily to the hatchery so she could at least catch a fish!

If you don’t know what a hatchery is, google it! Its where you “grow” fish 🙂 The last pond in the process is full of really nice trouts just waiting to be picked up and dropped in a lake somewhere on the property.

For a fee, someone can fish in there….. you can barely call it fishing… the fish are almost jumping out to come see you 🙂

Emily was still new at walking so standing on the side of the lake to fish was somewhat dangerous. Fred (my father-in-law) suggested we sat Emily on a bucket…. an upside-down bucket that is.

This takes us to this second picture…. Once again, an amazing picture.

fishatkenauk

Emily caught some trouts and was super excited that she could fish! One more thing we could cross off her list! She was a fisherman!!!

From that point on, whenever Emily saw Jon’s fishing rod out, she got excited because she thought she was going fishing. Whenever he went fishing without her, she got upset…. She didn’t speak but it was obvious that she wasn’t pleased with her dad! When we saw Jon’s parents, Emily was hoping to go fishing… Jon and his dad enjoyed fishing and Emily knew it.

…….

8 years later, my father-in-law passed suddenly and we opened-up our house to our family. Many people came by after the funeral. We were obviously all sad, we were trying to make sense of a tragic loss and we were sharing memories and drinking to the memory of a great man…

Suddenly Emily asked if she could say something.

……

…..

This is always a little awkward, we never know what Emily will say, never know if it will be appropriate to the situation or if she is going to talk about Justin Bieber…..

…….

That day, we were all family… everybody knew Emily… we gave her the floor.

Emily was 12 years old…

As she stood in the middle of our kitchen she told everybody that her best memory was of her grand father teaching her how to fish. She told the story of her birthday party and that her “papie” took her to the pond and turn the bucket upside-down so she could sit and fish with her little purple rod…

She understood perfectly what was going on.

At the hospital, I had asked her if she would like to go see her “papie” and she said no. When the doctors told us it was over, I tried to explain to her what was going on… instead she explained it to me.

“Papie is gone, I won’t see him anymore but he is in my heart. I can still talk to him, in my heart”

She understood perfectly what was going on… She didn’t cry… It took months for her to even talk about her “papie”… actually, she didn’t talk about it, she wrote a story at school about how she sings to her “papie” when she misses him. She sings “I miss you” from Miley Cyrus…

She understood…

My daughter, the one with the extremely rare syndrome was the one who understood what was going on… Of all the people impacted by the loss of a great man who left us way too early, she understood how to grief and understood that if she believed he was still with her, he would forever be with her.

From the day she was born, they were connected and from what Emily is telling me, they still are!

In thinking of the people you have lost, could you do like Emily and keep them alive within you? Smile when you think of them? Sing to yourself when you need peace?